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Kids with chronic pain enter treatment program in wheelchairs, leave on their feet

The FIRST program offered at Cincinnati Children's
Posted at 1:05 PM, Sep 24, 2018
and last updated 2018-09-24 17:11:12-04

CINCINNATI -- Less than a year ago, 17-year-old Alyssa Strohsack could barely move without excruciating pain.

“My pain had gotten so bad that I couldn’t tolerate weight-bearing … couldn’t wear shoes, no socks,” she said.

Strohsack said mundane tasks like brushing her hair became painful. Strohsack, it turned out, was suffering from a pain condition. She, like many other young people, was experiencing pain year-round.

That’s where the Functional Independence Restoration Program, or FIRST, at Cincinnati Children’s Hospital Medical Center comes in.

FIRST helps children and teens like Jonathan Harvison, 18, who first struggled with pain at age six. In 2018, Harvison was diagnosed with the connective tissue disorder Ehlers-Danlos syndrome, according to his mom.

Patient Jonathan Harvison

“He could walk but if we were out for more than two hours, he was in a wheelchair,” Amy Harvison said. “And if we walked for two to three hours he’d be down for two to three days because his pain would be so big.”

In the FIRST program, young patients with pain are treated with tools like music therapy and holistic healing. The program is a combination of physical therapy, occupational therapy and behavioral medicine.

The FIRST program is part of the hospital’s Pain Management Center. It’s one of the country’s only comprehensive inpatient rehabilitation programs for children ages 10-18 whose chronic pain prevents them from living a quality life.

The program’s clinical director, Sara Williams, said one in 20 children will become severely disabled by pain.

“There are only about a dozen of these pediatric pain rehab programs in the country and only a few of those are inpatient," Williams said. "So we’re really unique with what we do here."

During sessions that last up to three weeks, teens like Strohsack find therapy through music. She plays the drums, makes music videos and dabbles in songwriting.

“A lot of these kids may have been told that their pain isn’t real, that they’re exaggerating,” said Music Therapist Brittany Knapp. “Being able to use songwriting really gives them the opportunity to tell their story the way they want it to be told.”

For others holistic healing is a more successful therapeutic approach, said Holistic Health Specialist Peg McGrath.

“Little by little they start building up their body and their confidence and their spirit shows up,” she said. “They become more confident with every step -- everybody has walked out of here.”

That’s certainly the case for Jonathan Harvison. He started the program in a wheelchair. Days before his final therapy session in Cincinnati, his mother took him roller skating.

“It didn’t just change his life -- this will have changed my family’s life because I can leave home now without worrying about him having some pain,” Amy Harvison said. “This program has given us our life back.”

Patient Alyssa Strohsack

Strohsack ditched her wheels as well.

“I came in here in a wheelchair and I left running,” she said.

The program is approaching its five-year anniversary. Since its beginning, 122 children from across the country have been admitted. More than 90 percent of patients have returned to a healthy level of function.

According to Cincinnati Children’s, children with the following symptoms or disorders may benefit from the FIRST program:

  • Amplified musculoskeletal pain syndromes
  • Complex regional pain syndrome (reflex sympathetic dystrophy)
  • Fibromyalgia
  • Functional abdominal pain syndrome
  • Noninflammatory joint or back pain
  • Widespread pain related to joint hypermobility syndromes

Learn more about the FIRST program here.